Accepting the diagnosis of dementia

How would you respond if you had just been told that you had dementia? Reactions to a diagnosis can vary from shock, fear and anger to sadness, despair and denial. Some people become withdrawn, stop going out and become reluctant to see family and friends. This can deeply upset those closest to them who don’t know how to help.

Many people diagnosed with dementia believe that very little can or will be done for them, particularly in the early stages. But the potential for support – enabling people with dementia and their carers to face the challenges of a diagnosis and lead a meaningful and positive life – is high and can do a great deal to challenge the stigma that is sometimes attached to dementia.

If we don’t accept it, we allow denial a foothold, and there is simply no time for denial with this disease. Alzheimer’s does not wait for us to accept it.

Leeanne Chames, a carer contributing to the Alzheimer’s Disease International (ADI) ‘I can, I will’ website.

This section on support after diagnosis is written on the basis that people receive a diagnosis of dementia at an early stage.

What does good support look like?

Helping people to come to terms with a diagnosis, to make decisions and plan ahead is critical in supporting them to live well with dementia. As more people receive an earlier diagnosis, new challenges for the type of help required emerge for everyone involved – from the person with dementia to their family and all involved in providing care. Although there is no single model of support, it begins with helping people to accept a diagnosis and understand their circumstances, fears, beliefs and hopes.

Many positive things can be done to help people with dementia, their families and carers at this early stage. Providing the right help at the right time, tailored to support individual needs, can make an enormous difference. Good information, advice, guidance and practical help may come from GPs and other health and social care professionals and dementia and older people’s organisations. Help can include access to peer groups, online forums and 24-hour helplines established in many parts of the UK.

Leading dementia charities, including the Alzheimer’s Society and Alzheimer Scotland, are at the forefront of campaigning to ensure people receive support immediately after diagnosis, while they have the capacity to make decisions, become active participants in their own health care and plan ahead. Ongoing, long-term support too is vital: helping people with dementia to enhance their coping skills, maintain control of their lives and improve their chances of being cared for in their own home for longer.

Facing the diagnosis

People will need time to come to terms with a life-changing diagnosis and should be encouraged to talk and ask questions about what it means. Leeanne Chames, a carer and administrator at Memory People, a dementia support group on Facebook, sums up the importance of accepting a diagnosis in the following way:

I think it’s the stories told by those who live with this disease – and by those who are walking it with them – that most effectively bring support and awareness. I believe it all begins with us, when each one of us, either as a patient or a caregiver is confronted with the reality of this disease. In that pain and sadness, we are faced with the acceptance or denial of it. If we don’t accept it, we allow denial a foothold, and there is simply no time for denial with this disease. Alzheimer’s does not wait for us to accept it.

A diagnosis can sometimes change relationships with friends, as one carer explains on the healthtalk website: ‘My relationships with friends... have changed. Some have become much closer, but others... I’ve lost touch with completely over five or six years.’

Another carer, again on healthtalk, says he deliberately made contact with one or two friends he hadn’t seen for some time: ‘They were all immensely relieved, very pleased indeed that I’d made contact. All of them that I spoke to said, “We wanted to make contact with you, but we didn’t quite know how to do it or whether you would welcome it”.’

Understanding the diagnosis

Acceptance of a diagnosis frequently coincides with a desire to learn as much as possible about the diagnosis, the particular type of dementia diagnosed, and potential treatment options. People with dementia and those close to them may approach a number of different professionals – GPs and other health and social care professionals, and care and carer support organisations – to ask about support after diagnosis and medication that may help.

Health and social care experts recognise that support varies from place to place, and person to person. Some people are being offered too much, or too little information, after being diagnosed or may struggle to get the right guidance at the right time. In the Social Care TV film ‘Living with young onset dementia’, dementia consultant Maria Parsons says: ‘The problem is people are getting a lot of help at the beginning and then are left to fend for themselves without really being plugged into local services.’

It is important to remember that people who have poor literacy skills or who come from a different background may need additional help (that is, information presented in video format or in a particular language) to understand their diagnosis and the implications.

Who can help?

Health and social care professionals and leading dementia and older people’s organisations lead the way in providing guidance, support and care for people with dementia and their family and carers.

Here’s a quick guide to who they are:

The GP plays a key role in providing initial information and advice and provides links to other professionals.

The local community mental health team (CMHT) includes community psychiatric nurses who carry out community assessments, treatment, care and support.

Memory clinics – here clinical psychologists work with consultants to assess memory and learning abilities and advise on future support.

Day hospitals – follow-up support may be offered here after a diagnosis.

Day centres – available to people before and after a diagnosis in many areas.

Occupational therapists (OTs) assess the impact of dementia on people’s daily lives and provide practical help to enable them to live independently.

Speech therapists help with communication difficulties and offer support and advice on alternative forms of expression.

Community social workers assess people’s abilities, identify and arrange care and support and offer advice on welfare support and rights.

Dementia charities such as the Alzheimer’s Society and Alzheimer Scotland provide dementia advisers and a wide range of community information and support services, including 24-hour helplines and forums.

Counsellors – some specialise in dementia and may be able to help people come to terms with and adapt to dementia.

Expert welfare, legal and financial advice can be provided by organisations such as AgeUK and the Citizen’s Advice (see the section Dementia and decision-making).

Specialist groups can play an important role in providing support for people from black and minority ehtnic (BME) communities. Research carried out last year by SCIE shows that BME groups are under-represented in dementia services, partly because of awareness levels and the existence of stigma (Moriarty et al 2011). In London, a Department of Health-funded minority ethnic advocacy project has helped to highlight the need for specialist help.

Peer support groups

A growing number of peer support groups – that is, groups for people who have dementia and who wish to support and learn from each other – are operating successfully across the UK. They play an important role in helping people with dementia and their families and carers to come to terms with their diagnosis and to get the best help and advice.

Peer support can be facilitated by an organisation such as the Alzheimer’s Society, Alzheimer Scotland and Age UK through their network of dementia cafes and local carer support groups, or through community mental health teams. Support groups excel in helping people to be less socially isolated and to maintain independence and life skills.

Peer support can also be provided by campaigning groups, for example the Scottish Dementia Working Group (SDWG), a national campaigning organisation run by people with dementia within Alzheimer Scotland. The group campaigns to improve services for people with dementia and to improve attitudes towards people with dementia.

People with young onset dementia, struggling to come to terms with the challenges of being diagnosed at a young age and the challenges of staying in work and maintaining a home and family, particularly benefit from peer support groups.

Dementia forums

A growing number of people, particularly family carers, are asking for advice, sharing information and joining dementia discussions online. The Alzheimer Society’s Talking Point is one of the most popular internet forums. More than 150,000 messages have been posted since its launch in 2003. The forum is a place where anyone can ask questions and raise concerns over everything from legal and financial matters to diagnosis, memory and care issues.

Here are just some of the comments people have made about the value of online forums:

At last we find a place where others truly understand what living with/coping with dementia means when the rest of the world seems uncomprehending, uncaring or dismissive.

Talking Point member

This invaluable service helps people deal with the whole process of dementia: from diagnosis through to dealing with the illness and the sadness of loss. For carers especially, it is often the realisation that they are not alone that gives them the energy to continue in their caring role.

Talking Point member

I am virtually housebound with my caring role, but with my friends at Talking Point I am never alone.

Talking Point member

(Source: these quotes appeared on The Big Give’s website in 2012)

Innovative help

A wide range of innovative projects and schemes have been introduced to help people come to terms with their diagnosis. Dementia cafes have been set up in many areas of the UK to enable people with dementia and their carers to socialise and share experiences with others who are facing the same challenges.

A number of initiatives have been put in place to guide people to relevant and reliable sources of information to allow them to feel more in control of their lives and better able to manage their condition. They include the provision of dementia advisers, who act as a key contact for people with dementia and their families/carers. Dementia advisers work closely with other health and care professionals and help with access to peer support and counselling.

One of the most successful innovations has been the Facing Together Dementia Project, funded by the Scottish Government. One of the areas operating the project is East Renfrewshire and Renfrewshire. It runs a monthly dementia cafe and provide information and support tailored to people’s needs, including practical advice and guidance on legal and welfare matters and play a key role in helping people to live well with dementia and remain in control of their lives.

In a video about the success of the project, one young carer says the dementia cafe helped to transform the life of his father. ‘When he was first diagnosed his thoughts were... “I’m 58 years old and I’ve got nothing to live for”. Now, six months later, he realises it’s the start of a new stage in his life... that it’s not over.’ Others talk about how the cafe is ‘full of positivity’ and has given them ‘great hope for the future’.

Care worker’s role

A care worker can play an important part in helping a person to accept and understand the diagnosis, manage the symptoms and live well with dementia. In working closely with the person with dementia, carers and family members, during their visits they can encourage:

visits to GPs (or from district nurses) if there are concerns over health and wellbeing

taking up or continuing hobbies, pastimes and social interests to help prevent isolation

positive involvement with support groups, peer groups and dementia cafes

healthy eating, exercise and involvement in everyday tasks.

A person with dementia may rely on a care worker to provide regular advice and support, particularly if they live alone without everyday support from family and friends. A care worker can help by being aware of community and other relevant support. In all circumstances, it is important that a care worker adopts a positive approach, is patient, a good listener and offers reassurance.

Further reading Open

‘Access to information’ video (2010)
This is an 8-minute video from the Department of Health focusing on services that establish people’s needs for information or advice, and connect them with the support they require. It includes footage from a range of schemes: the Tameside Council Older People’s Partnership scheme to help people stay independent; the One Link information prescription project on the Isle of Wight; and the First Contact Signposting Scheme in Nottingham, a service matching practical support with help and advice.

‘Dementia Engagement and Empowerment Project (DEEP)’
The Mental Health Foundation’s website explains the DEEP which investigated ways in which people with dementia are involved in shaping services – and ways in which they would like to be involved in the future. The project ended in 2012 but a second phase of the project commenced in 2013.

‘Memory café’ video
This is an NHS Choices video about memory cafes and how they offer people with dementia and their carers the chance to socialise and share information. Here, one group talks about what the experience means to them and how the specific activities offered at the café benefit them.

Facing dementia
This 2008 Health Scotland publication is written for people newly diagnosed with
dementia. It covers topics such as ‘Staying well’, ‘Practical
support’ and ‘Planning for the future’.

Living well
with dementia: practical tips and advice
In this NHS Scotland film a number of people with dementia share practical tips
for managing day-to-day living with dementia, such as putting up signs and instructions
in the kitchen for safer meal preparation.

Dementia Diaries
The Dementia Diaries project involves people living with dementia keeping an audio record of their daily life with dementia. Contributions cover a number of themes: care and support, public perceptions, family and friends, living well with dementia, daily challenges, and policies and service provision. The project is the work of the non-profit communications organisation On Our Radar working with DEEP.

Memory café
An NHS Choices film about memory cafes and how they offer people with dementia and
their carers the chance to socialise and share information. Here, one group talks
about what the experience means to them and how the specific activities offered
at the café benefit them.

Still going strong
This online booklet by the Mental Health Foundation is for people who want to find
out more about living with dementia. It is particularly useful if you have recently
been told you have dementia and want to know more about what this might mean. The
material covers ‘Is it dementia?’ ‘Living with dementia’,
and ‘Planning for the future’ and includes a section on strategies that
people with dementia have found useful.